Your child will have regular clinic appointments, generally every three to four months. These visits usually involve a number of tests, to see whether HIV is affecting their health and development.

Looking at the results of these tests, you and your doctor will be able to decide on the best course of treatment for your child. As it gets closer to the time your child needs to start HIV treatment, they may need to have more frequent clinic appointments. They will also have more frequent appointments in the first few weeks after starting treatment, either with a nurse or a doctor.

Your child is likely to have his or her own opinions about treatment. They will probably express these in different ways as they get older. Their views should be considered as part of the decision-making process.

HIV can affect all the organs and systems in the body. When your child sees his or her HIV doctor, they will usually have a physical examination to check on their health and development.

Your child will be measured and weighed to monitor their growth. There’s some evidence that children with HIV can have a slower rate of growth. Children with advanced HIV who have not been on treatment, and therefore have damaged immune systems, may enter puberty later than HIV-negative children. Children with good immune systems, including those on successful treatment as well as those not yet requiring treatment, generally enter puberty around the same age as those without HIV.

Looking at how alert or happy your child is will help the doctor assess his or her health.

The doctor will check for rashes and dry skin, both of which are common in children with HIV.

By gently pressing down on the stomach, the doctor will be able check for any abnormalities and problems with the internal organs.

Using an instrument, the doctor will look into your child’s eyes, ears and throat. This isn’t painful, and you or the doctor may make a game of it to make it seem less threatening for your child.

A stethoscope will be placed against your child’s chest to check their breathing and heartbeat.

Your child’s blood pressure will be monitored with an arm cuff.

Regular blood tests are an essential part of care for everyone with HIV.

A lot of adults don’t like having their blood taken, and children can find it a frightening and distressing experience. There are a number of things that can be done to make it less unpleasant; for example, the skin can be temporarily numbed by applying anaesthetic cream or a cold spray before the blood is taken.

Explaining what is happening, and distracting children from the procedure can help make the experience less frightening. Over time most children gain confidence about blood tests if they have had good experiences and their fears have been allayed. Most children’s clinics have specialist blood-taking teams who know how to help children with this. People who take blood from children are very experienced at managing this and making the process as calm and gentle as possible.

After the blood has been taken, give your child a hug and congratulate him or her for being brave.

As with adults, the key tests used to monitor HIV in children are:

• CD4 cell counts and percentages
• HIV viral load.

CD4 cells are a type of immune system cell. The CD4 cell count can give a rough indication of the health of the immune system, and viral load shows how active HIV is in the body. CD4 percentages indicate what percentage of immune system cells called lymphocytes are CD4 cells.

Because children’s immune systems aren’t fully developed, their CD4 cell count and viral load are different from those in adults. CD4 cell counts tend to be higher in young children than adults, but these stabilise as the child gets older. Measuring CD4 percentages can sometimes be a more useful way of monitoring immune health in very young children (under five years) than CD4 cell counts.

In babies, viral load can rise to very high levels and only decline very gradually over the first few years of life.

Looking at the results of these tests can help doctors decide when your child should start treatment for HIV, when they may need treatment to prevent other infections, and to see how effective any HIV treatment is. There’s more information on treatment to prevent infections and starting and changing HIV treatment later in this booklet.

Your child will also have regular blood tests to monitor other aspects of health. For example, tests will look at how organs such as their heart, kidneys and liver are working and to assess for anaemia and other infections. Looking at the results of these tests, your child’s doctor will be able to see if any further investigation or treatment is needed.

Sometimes, if your child is not well, it may be necessary for samples of your child’s urine, sputum or stools to be checked for infections.

Scans, X-rays and ultrasounds are used to help diagnose some health conditions. They are not painful, but they might be a new experience for a child and therefore unsettling. X-rays expose your child to a very small amount of radiation, but these tests will only be used if the clinic team thinks they are necessary to help diagnose a problem. The dose of radiation is minimal and X-rays are never conducted on children unless they are absolutely necessary.

There’s more information on tests regularly used in the care of people with HIV in NAM’s booklet CD4, viral load & other tests. Although it is a guide to the medical monitoring of adults living with HIV, much of the information also applies to the care of children with HIV.